In January 2024 I was diagnosed with a rare form of Non-Hodgkin’s lymphoma, called Burkitt’s Lymphoma. By the time I was diagnosed, I was already at stage 4, with the lymphoma spread throughout my body and bone marrow, and already affecting organs.

Many people have asked about my initial symptoms and how long ago I noticed something unusual. It’s a valid question to ask.  But after most everyone was asking that same question, it got me thinking:  Why does everyone want to know my initial symptoms?  I think the reason people are so interested is because cancer is everyone’s worst fear and they want to know the warning signs.  In our daily life, so many things we do or do not do are to avoid or prevent cancer.  I’ve never smoked and rarely drink alcohol.  I’ve been active and physically fit all of my life.  I don’t eat fast food, drink from plastic water bottles, and have always been cautious about what I put on and into my body.  I always considered myself to be healthy.  Yet, there I was a healthy, active and fit 53 year old who suddenly got cancer that had already progressed to stage 4.  Of course I was shocked as was everyone around me.  When you see a peer come down with the ‘worst fear’ scenario, it makes you stop and ask, “If it can happen to him, will it happen to me?”  The truth is that no one knows.  

Cancer doesn’t seem to care how many miles I’ve run, how much organic spinach I’ve eaten, what supplements I take or that I stayed away from microwaving in tupperware. Instead, I’ve filled my plate with organic produce for the last 15+ years, cut out almost all sugar and processed foods, drank filtered water and switched all household cleaning products to ‘natural’ and chemical free brands and still here I am. I’ve scratched my head about this and brought it up to my doctor out of frustration and a little bit of “Why me?”  My doctor made a good point and it is important to share.   My healthy lifestyle does make a difference in how my body will handle intense chemotherapy treatment, bounce back and recover from and eventually heal the cancer.  A healthier person typically fairs better when faced with their worst fear.  So I will not be running out for McDonald’s and smoking 4 packs per day anytime soon.  But if it can happen to me, yes, it can certainly happen to anyone, at any time.  Be the healthiest you can be so your body is ready to take on what life throws at you. 

Here is my story:  

I’m not sure how long I had cancer running through my body, but in hindsight I first observed bone pain in October of 2023 (and perhaps earlier).  It was in my jaw and tooth.  I thought I had a tooth that was giving me problems.  I would later learn that mouth, jaw and tooth pain happen to be hallmark symptoms of Burkitt’s Lymphoma.  

Weeks went by and I was having some odd pains here and there, but I brushed things off.  Doesn’t everyone have odd symptoms here and there?  Some neck pain or aches around the body.  But one night while in my son’s room, I couldn’t get up to walk.  My femurs hurt so badly that I had to crawl into the bathroom and take a hot bath. I had no other alarming symptoms and the bone pain seemed to resolve. 

Then came Thanksgiving.  That week I suffered from intense headaches.  

These headaches forced me to take a break from work and my wife found me laying in bed and thought that was very odd.  I assured her that I just had a bad headache and would take some Advil.  But I had to keep taking Advil for days.  It is not normal for me to get bad headaches and need to take Advil plus lay down in bed.  I really didn’t think much of it, but in hindsight I was also experiencing fatigue. I recall switching to caffeinated coffee because I was so tired every day. 

December 1st I enjoyed a hard workout.  It was nice out that day and so I went for a run and I pushed myself a bit harder than I had in a while.  It felt good.  The next day I would be 53 so I felt like giving a little extra.  My birthday was spent with my wife and son having a relaxing lunch at one of our favorite spots.  I was tired, a little sore and in hindsight, a little off.  

The next day, December 3rd I had neck pain along with a headache.  

December 5th I wrote in my journal, “Really a lot of pain today. I don’t know if it’s gastritis or an ulcer. The pain is so bad now it’s 8 PM and I am suffering really badly. I don’t know if I should go to the hospital. It’s so bad I don’t know what to do.  I have pain radiating throughout my body.  My back, down to my legs.  It feels so bad. I think it’s my stomach and my back.  I don’t know.”

Did I pull something?  I thought perhaps I must have worked out too hard. I was stiff and sore and had this pressure in my lower back.  As the days went on, the pain got worse.  It was deep.  It felt like there was something pushing inside my back.  I was having a hard time working.  I couldn’t concentrate.    

Thursday, December 7th journal entry:  “Been awake since 3am.  Advil wore off.  Pressure in my lower back.”

At 1pm that day I got body chills.  I thought I must have been getting sick.  I went to my primary care physician and she prescribed Prednisone and Flexeril and ordered an x-ray of my back. She believed I hurt myself with my recent workout.  I took the Prednisone and Flexeril and felt no relief.  

Friday, December 8th journal entry:  “Bad back pain.”

I went to get my x-ray.  Results came in that night and showed nothing unusual other than minor “wear and tear” one would expect at my age.  It was now Saturday and the pain was intensifying.  Pain like I’ve never felt before and can barely describe.  On a scale of 1-10 with 1 being so mild you can get through your day and only slightly notice and 10 being the most pain you can imagine, I was at 10.  I was also having night sweats or just sweating any time I fell asleep and the chills would come and go. 

Sunday morning, December 10th, after I took another dose of Prednisone, my wife noticed I was very pale and almost yellow.  She was worried. 

Sunday night my wife was getting our son to bed.  By this time, I had already been unable to do our nightly routine with our son.  I was in too much pain.  I couldn’t help him in the bath or bend over to tuck him into bed.  I thought, how could I have possibly injured myself so badly?  Earlier that day, I tried to relax, lay down, massage my back a little, get comfortable, take Advil, but nothing worked.  By 8:30 I was out of my mind in pain, level 10.  I had to go to the ER.  With my tired and frightened son in tow, we headed out into the usual miserable PA weather.  Pouring rain, freezing cold and a night in the ER.  My wife called her mom as we were driving.  Plans were made to drop me at the local ER and take my son back to our house where his grandmother would stay the night to look after him.  My wife came back to the ER and made sure I was taken care of.  The ER was empty.  I was seen immediately and honestly was in no position to wait.  The pain was too intense.  There was no one else there and nurses were standing around chatting.  I assumed all hands would be on deck for me and I’d be given excellent care.  The nurse came in to take vitals and all was good.  No one was panicking, but I felt like I was dying from such intense pain.  We went over my symptoms and the events of the last few days.  The nurse and doctor both blamed my pain on a back injury of some kind.  They checked the x-ray that I had done at the same hospital two days prior and said that it was probably muscular or maybe even a nerve.  Since my symptoms were level 10 pain and pressure they gave me a painkiller, the strongest they had in the hospital.  

An hour went by.  I was sweating, moaning, groaning, heart racing, and in agony.  My pain level was still at a 10.  They gave me another dose of pain meds: Dilaudid + Fentanyl.  My pain dropped to about 9.5.  My wife questioned the doctor a few times.   She asked many questions and kept repeating my symptoms, “How could he have injured himself this badly without knowing it? There was no event.  He didn’t twist, pull, bend or move in any way that hurt.  The pain started slowly and has intensified and gotten worse with rest.  He’s sweating.  He’s having chills and night sweats.  He keeps saying he feels pressure, not a pulled muscle.  He had intense headaches for days. He’s having pains in his legs too.”  The doc was confident that I had injured myself without knowing it.  He said I was getting older and sometimes you can sneeze and throw your back out.  He said that pain can give you chills and make you sweat and that I was taking a lot of Advil so maybe that was bothering my stomach.  He said that pain can radiate when it’s that intense.  The doc saw no need to investigate further.  No blood work was done and  no additional imaging was ordered. Doc suggested rest, heat, ice and physical therapy. I was sent home with more pain killers and told to follow up with my primary care physician.  

I spent the next few weeks in intense pain, with worsening symptoms, desperately trying to get help from several doctors. 

Take away:  Know your body and listen to it.  Take notice and write notes. 

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Continue reading ‘Part 2:’ https://vincepaton.com/2024/04/05/cancer-journey-part-2-weeks-of-pain-and-chasing-a-diagnosis/